Looking after a child with autism can, at times, be challenging. Doing everyday things like going out shopping or meeting friends with your grandchild can prove to be difficult. People may unfairly make remarksabout your grandchild being naughty because they can't see that they have a disability. 

"We've experienced plenty of misunderstandings. All the usual ways. He gets extremely distressed by loud noises and starts screaming his head off, so we've encountered plenty of stares and comments: 'If that was my child I'd give them a slap'.

I was stood once in the post office, [my child] was running around the shop, and someone in the post office tutted. I said to [my child] loudly 'Maybe we should get you a sticker that says you're autistic?' Some days I think, why can't I go out without people judging me? Most people are fine with it. You don't realise there's anything wrong with it unless you're with him every day. You learn to stick up for yourself. You can't run away in tears every time someone looks at you funny."

Parent with a child with autism 

There are some strategies you can put into place to help your grandchild's understanding and in turn lower anxiety levels and therefore difficult behaviours. We sell information cards and Autism Alert cards which can be shown to members of the public if you find yourself in a difficult situation. See the 'Resource' section below for more details. 

Reduce your language

Reducing your language is one of the first steps to helping your grandchild understand you. There are a number of reasons why reducing language is important:

  • some people with autism cannot always block out external noises or automatically tune into the human voice. All the noises around them may have equal importance for them. For example, they may hear the water running through the radiators; their sister typing on the keyboard in the next room; cars going past outside, the radio on in the kitchen and the TV on in the front room, as well as trying on concentrate on what you are saying to them
  • some people with autism have difficulty picking out the important words in what you say
  • some may have difficulty sequencing what you have told them.

Even if your grandchild speaks fluently they still may have difficulties understanding what you are saying to them. Reducing your language will not delay their speech or teach them bad habits.

Always start talking to your grandchild by saying their name first. It is important to use their name first to make it very clear you are speaking to them, even if it is just the two of you in the house. Using their name will also give them a chance to tune into your voice. 

Take out all unnecessary words and phrases and give then time to process what you have just said. You may have to wait an unusually long time before speaking again to give your grandchild time to make sense of what you have said. If you rephrase your question again too quickly, they may have to start processing what you have said all over again and become frustrated.

So, for example, instead of saying 'It's time to put your shoes on, Joshua. We are going to the park to feed the ducks. Put your train away now. Come on, quickly' you could say 'Joshua, shoes on, park'. Then wait. Showing Joshua his shoes and a picture of the park would ensure he really understands what you are saying to him. To help remind Joshua you are going to the park, give him the picture to hold. When it is time to leave the park, give him a three-minute countdown and a picture of where you are going next.

Using visual supports

Using visual supports to give your grandchild extra 'cues' is also very important. Most people with autism are visual learners, so when talking to your grandchild, show them a visual cue (picture) as well. A younger child may need to be shown an actual object first; later, you may be able to move on to photographs, black-and-white line drawings and then words.

Case study

Mary's grandchild Jake, is four years old and has a diagnosis of an autism spectrum disorder. He can speak fluently, write his name and complete complex puzzles.

Mary and Jake always have lunch at 12 noon, Mary prepares him for the change of activity with the same dinner song, Mary then says 'Jake, time for dinner'. Jake goes and washes his hands and sits up at the table ready for dinner.

On one occasion Jake did not respond to the dinner song. Mary then said 'Jake, time for dinner'; Jake just stood staring at his grandmother. Mary said again 'Jake, time for dinner' and went to take his hand. He screamed at her, pulled his hand away and went to pick up a book. Mary said a third time 'Jake, time for dinner'; he screamed at her and continued to look at his book.

Mary then went and found the packaging from the fish fingers they were having for lunch and showed it to Jake, saying 'Jake, dinner'. Jake looked up at the picture and said 'Oh, dinner!', stood up, put the book away, washed his hands and sat at the table for dinner.

Children with autism often need visual cues to remind them what they are doing, how long activities will last and what they are going to do next. They often feel more relaxed with a visual structure. 

Using pictures to help communicate will not stop them developing speech. Using pictures will give your grandchild a better chance of understanding you, and lower anxiety levels.  

Having a timetable at your house with pictures of the activities for your grandchild to complete will help them to know what is expected of them. You could have five pictures: toys, book with nanny, biscuit, video, home. These pictures could change depending on what you are doing during each visit, although always have the 'home' picture as the last symbol so they can see when the visit has finished and where they are going next.

Our Autism Helpline can tell you more about using visual supports.

You may sometimes go to your grandchild's house to look after them. If this is the case, it is important to keep the same routine they have with their parents. This may need to be written down for you so you know the exact order in which the routine happens, for example does your grandchild have a drink before a bedtime story, or do they have a favourite CD to listen to in bed? Does a certain light need to be left on?

Your grandchild will also need to go to bed at the same time, for some children with autism, a change in routines can lead to high levels of anxiety and in turn difficult behaviours. 

Your grandchild will need to be shown that you are coming to care for them that evening. For example, one of their parents could show them a photo of you and add it to their daily timetable. They will also need to reassure them, again visually, that they are coming back at the end of the evening.

Case study

"My wife Gwyneth and I are proud grandparents of eight-year-old Charlie, who has Asperger syndrome. This wasn't evident at first. When he was born, he was like every other baby - the apple of everyone's eye, as he still is now.

As he got a little older, we noticed little things that didn't quite fit into the usual pattern of children his age. The biggest cause of concern was the constant lack of eye contact; it was as though he were ignoring you when you spoke to him, which made him appear quite rude. Unfortunately, I'm not long on patience and this caused me to raise my voice somewhat in order to get his attention, something I regret in hindsight.

Other little things occurred, like his compulsion to speak to complete strangers, anytime or anywhere. I remember taking him to the park and going for a walk around the lake. As we where about halfway around, we saw two men sat fishing next to a no fishing sign. 'Grandad,' he yelled loudly, 'Why are those men fishing, when it says no fishing?' Regrettably the ground didn't open up and swallow us as I'd wished! The embarrassment I felt then was to be repeated quite often. I'm sure many parents and grandparents have gone cold at times, while out with their Asperger child. Will they notice that a person is fat or has a big nose? Will they want to know why someone has only one leg? Yes, I am afraid they will and they won't hesitate to ask! When we did eventually realise he had Asperger syndrome, this embarrassment was replaced by an added sense of protection and understanding towards him."

Brian Webb, Grandad